Raised vitamin B12 - has anyone found this as an ... - PMRGCAuk

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Raised vitamin B12 - has anyone found this as an aspect of PMR

Alchemy8 profile image
9 Replies

For a good five years I would say I have registered very high Vitamin B12 levels (2000ng/1 when the mean level ranges between 200 and 960) and no doctor or consultant (one asked in Bath Royal) have any ideas about it. As PMR is so full of surprises I thought I would see if anyone has had any experience or ideas about this. Nothing ventured nothing gained!

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Alchemy8 profile image
Alchemy8
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9 Replies
Koalajane profile image
Koalajane

I recently had high B12 levels, not as high as yours at all and only about 800 I think and my doctors checked up on it with a blood test 6 months later with my level going back into normal. Not a lot of help I am sure.

PMRpro profile image
PMRproAmbassador

Never mind ideas - have they tested to rule out potential nasties?

Alchemy8 profile image
Alchemy8 in reply to PMRpro

Yes thank you PMRpro nothing there. On the other hand the medics aren't really focused on too much; rather it is the lack of B12 that is uppermost in their minds. It doesn't make sense and may be due to malabsorption - who knows?

PMRpro profile image
PMRproAmbassador in reply to Alchemy8

Surely malabsorption would make it low?

I know - there is a complaint about their fixation about low levels being a problem and the high levels being nothing to worry about. Normally B12 levels out as it is water soluble so not stored like vit D.

Alchemy8 profile image
Alchemy8 in reply to PMRpro

There is some thought about it being linked to auto-immune disease like lupus and RA and of course the nasties but those are checked with the bloods anyway. I think I shall ask for more in depth studies prior to the next blood test. My current GP is a bit more proactive than the previous one.

Benos123 profile image
Benos123 in reply to PMRpro

Good Morning, Could you please explain a little bit more about and what these "nasties" are.

PMRpro profile image
PMRproAmbassador in reply to Benos123

"Usually, excess vitamin B12 is removed in the urine. Conditions that can increase B12 level include: Liver disease (such as cirrhosis or hepatitis) Myeloproliferative disorders (for example, polycythemia vera and chronic myelogenous leukemia)"

mountsinai.org/health-libra...

academic.oup.com/qjmed/arti...

is an academic article about high B12 levels.

When I mention "nasties" it probably generally means cancers or other severe illnesses of some sort ...

Benos123 profile image
Benos123 in reply to PMRpro

Much obliged and Thank You.

Megams profile image
Megams

~My readings were high some years back (sorry can't recall now) & no doubt still high.

I drink unsweetened coconut/almond milk which is fortified with a variety of ingredients, B12 being one such addition.

I was told not to worry about it so you pose an interesting question generating an equally interesting response from PMRpro.

I don't do dairy (milk) but recently started introducing soya milk just for the variety ~

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